As I lay here in my hospital bed thinking of all the kind words, comments, cards, posts, and texts I can't hold back the tears.
Being here in the hospital is a very isolating time for me. Everyone here on East 8 is restricted to a small part of the floor. When I feel well enough to get out of bed I don't have very far I can walk. This round of chemo I have spent most of my time in bed and not feeling up to having visitors very often. The staff here is great and outside of family are the ones I talk with the most. Being disconnected from my family, friends, and neighbors is difficult.
When times get really tough I will go back and look at Facebook posts or reread texts and feel those connections again. They remind me that I and my family are part of a loving and supportive community.
It is difficult to describe how many ways people have reached out to me and my family with kind words and acts. Some from people I don't even know. Let me try to mention some without meaning to leave anyone out (but I know I will)
Wendi's Fight Club bracelets
dinners for my family
4000+ views of this blog
Comments on Facebook
Cards in the mail
Texts
Giving my kids rides to practice, school, games
Taking pictures of kids at games and activities
Books to read
Pictures for my wall
Snacks
Recording the Primary Program at church (naughty, naughty)
blankets
hats
visits
innumerable gifts
haircuts
laughter
memories of fun times
lawns mowed
prayers
raising leukemia awareness in the community
orange ribbons
http://posthope.org/wendi-and-family-journey-through-leukemia
and the list keeps growing
Even the smallest of these lift my spirits and give me added strength as I continue my fight against AML and fill me with an overwhelming feeling of gratitude and thanks to all of you. #wendiwillwin
With love,
Wendi
Tuesday, September 30, 2014
Thursday, September 25, 2014
Round 2
Even though Wendi was feeling pretty good when she was home, the fact that the day 35 biopsy had a small amount of leukemia meant she had to go back in the hospital for another round of chemo to kill the nasty disease.
In addition to looking for leukemia in her bone marrow the docs also check the central nervous system with what they like to call a Lumbar Puncture (LP) aka Spinal Tap. Last Friday Wendi had an LP done. One of the side effects of an LP is headaches for several days after the procedure. Over the weekend she managed them pretty well by lying down. Being up and about for much time would bring on strong headaches for her.
Sunday the LDS Ogden Temple was rededicated and Wendi really wanted to attend so I went to the chapel early and snagged seats right by the door so she could slip in just as it started and slip out as it was ending. Even though sitting that long gave her a very strong headache, Wendi really wanted to be there to enjoy the spirit of the event and remember the covenants we made in the SLC temple when we were married over 21 years ago.
After enjoying a nice 10 days at home watching soccer games, taking care of her family, attending the Ogden temple dedication and being more of a germophobe than either of us care to be, Wendi went back to LDS East 8 on Monday the 22nd to start Round 2.
Since her leukemia wasn't completely eradicated with the first round of chemo the medicines she will be given for Round 2 will be much more aggressive and more likely to have side effects. Almost from the first hour of the chemo beginning Wendi has felt nauseous and that combined with the lingering headaches has made for a long week. The medicines given to calm the nausea and headaches make her so tired she has been sleeping most of the day.
Round 2 started off with another bit of bad news. The results of the LP showed a small amount of leukemia in the fluid. The chemo medicines being used for this round will cross the blood-brain barrier to some degree but she will need additional LPs where they will take fluid and inject a dose of chemo directly in the spinal fluid.
Monday was a difficult day going back to the hospital but Wendi is strong and approached it with the attitude of overcoming. The support and love sent her way by so many friends, family and loved ones helps her in her fight. We wouldn't have made it this far as a family without the amazing outpouring of generosity from friends and family. I don't have words to describe what we have received as a family and even if I tried I wouldn't do it justice. We are very blessed and grateful for the kindness shown to us by so many people. THANK YOU.
I have no doubt that #wendiwillwin.
In addition to looking for leukemia in her bone marrow the docs also check the central nervous system with what they like to call a Lumbar Puncture (LP) aka Spinal Tap. Last Friday Wendi had an LP done. One of the side effects of an LP is headaches for several days after the procedure. Over the weekend she managed them pretty well by lying down. Being up and about for much time would bring on strong headaches for her.
Sunday the LDS Ogden Temple was rededicated and Wendi really wanted to attend so I went to the chapel early and snagged seats right by the door so she could slip in just as it started and slip out as it was ending. Even though sitting that long gave her a very strong headache, Wendi really wanted to be there to enjoy the spirit of the event and remember the covenants we made in the SLC temple when we were married over 21 years ago.
After enjoying a nice 10 days at home watching soccer games, taking care of her family, attending the Ogden temple dedication and being more of a germophobe than either of us care to be, Wendi went back to LDS East 8 on Monday the 22nd to start Round 2.
Since her leukemia wasn't completely eradicated with the first round of chemo the medicines she will be given for Round 2 will be much more aggressive and more likely to have side effects. Almost from the first hour of the chemo beginning Wendi has felt nauseous and that combined with the lingering headaches has made for a long week. The medicines given to calm the nausea and headaches make her so tired she has been sleeping most of the day.
Round 2 started off with another bit of bad news. The results of the LP showed a small amount of leukemia in the fluid. The chemo medicines being used for this round will cross the blood-brain barrier to some degree but she will need additional LPs where they will take fluid and inject a dose of chemo directly in the spinal fluid.
Monday was a difficult day going back to the hospital but Wendi is strong and approached it with the attitude of overcoming. The support and love sent her way by so many friends, family and loved ones helps her in her fight. We wouldn't have made it this far as a family without the amazing outpouring of generosity from friends and family. I don't have words to describe what we have received as a family and even if I tried I wouldn't do it justice. We are very blessed and grateful for the kindness shown to us by so many people. THANK YOU.
I have no doubt that #wendiwillwin.
Saturday, September 20, 2014
Change of Plans
So I was so excited to write my last blog entry I didn't mention that part of the protocol is a bone marrow biopsy after day 35 of treatment. (If you are counting that makes 3 biopsies in about 40 days- ouch!) I went back in on Monday the 15th for that procedure and then returned on Wednesday the 17th for the results. We had two options - no cancer cells in the marrow or cancer cells still in the marrow. Unfortunately we ended up with the second option...there are a small amount of cancer cells still in the marrow but not in the blood. This postpones my transplant date (the goal is no cancer cells before transplant). It also means that my stay at home is shorter than anticipated. I will be readmitted to the hospital on Monday the 22nd for another round of chemo - similar to the first but more aggressive. We just need to clean up those few remaining cells. My stay this time will be similar to the first stay but hopefully a little shorter. Although disappointed that I don't get to stay home longer, we are grateful that there are tests and doctors who can determine the best course of treatment and we feel confident in them.
Leukemia is about a 2 year journey with many ups and downs and stays in the hospital. We are at the beginning of the journey so please remember that being admitted back into the hospital is something that will occur repeatedly and is just part of the path. I wish I could be home longer but have been able to do all the things that I wanted and know that I need to go back and fight again.
Thank you to Wendi's Fight Club for all of your support. I am often overwhelmed by your kindness and love toward me and my family and I wish that there was a way to have the words "Thank you" convey the amount of gratitude, love and humility I feel toward all of you. The fight continues.
#wendiwillwin
Leukemia is about a 2 year journey with many ups and downs and stays in the hospital. We are at the beginning of the journey so please remember that being admitted back into the hospital is something that will occur repeatedly and is just part of the path. I wish I could be home longer but have been able to do all the things that I wanted and know that I need to go back and fight again.
Thank you to Wendi's Fight Club for all of your support. I am often overwhelmed by your kindness and love toward me and my family and I wish that there was a way to have the words "Thank you" convey the amount of gratitude, love and humility I feel toward all of you. The fight continues.
#wendiwillwin
Wednesday, September 17, 2014
A few random pictures
Just to lighten the day....here are a few pics.
The first is our attempt at an awkward family photo - think we nailed it. (Callie is the photographer).
A few of the messages left on the board in the hallway at the hospital where people can leave messages.
The first is our attempt at an awkward family photo - think we nailed it. (Callie is the photographer).
A few of the messages left on the board in the hallway at the hospital where people can leave messages.
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| The first artwork in my room. Whenever I needed a happy place to go to I looked at these. Thanks Brooke and Emily! |
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| From my first mission companion. Let me know if you figure out what it means! |
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| should also say love, Emily |
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| We do have some Chinese speakers in the family so I got a translation for this one! |
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| All of us should be able to translate that one! |
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| Here is another one of our Chinese speakers! Loved seeing it there! |
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| Once we knew the closet doors could be written on, they were filled up! |
Say What??!!!!"
On the morning of Sept.11, the nurse came in to give me my numbers for the day. She cringed as she told me that my neutrophils were still at 100. I didn't think they had improved and was not in a good mood that morning as I was walking the halls. As I walked, I thought about how I could convince the doctors to let me go home. My extended time in the hospital was taking a toll on me and on my family. In my mind, one of the hardest things was feeling so good and still not having my body respond in the way it should. I thought about begging, pleading and bargaining my way out. I was ready to offer to wear the mask and a clown suit if they would just let me go home.
After the nurse (Becca) told me my numbers she could tell I was not happy. Usually I would be chatty and positive about the next day but I was just ready to have myself a great big pity party! I wanted to be by myself and cry and sulk. I knew that later that day I would be fine but the pity party sounded like the way to go right then.
Fortunately, my mom and Debbi came that morning and saved my from my personal pity party. They listened to me cry and rant and cry some more. In the middle Debbi did one of the most selfless acts of love....she just grabbed my feet and started to rub them. The simple release that came from that act was astounding. Emotions just came out. I don't know how she knew to do that but I was/am grateful for her simple acts of love in my life.
We decided to go for a walk outside and mentioned that to Becca (nurse). She asked how long we were going to be and then suggested that we come back by about noon because we were going to want to talk with Dr. Mitchell. All this was said with a conspiratorial grin on her face. I wanted to hope but didn't dare so we just went for a walk.
Shortly after we came back, Dr. Mitchell came in to talk with us and told us that my neutrophils were still at 100. Then she asked, "How would you feel about going home today?"
SAY WHAT!!!!!????
With absolutely no hesitation I said (or I might have yelled) YES!! She cautioned us that I still had no immune system so I needed to be very careful and cautious. She could have told me to wear a hazmat suit with a clown wig and I wouldn't have cared - I was going HOME!!! I agreed to call if anything in my condition changed. Then I called Loren and told him to buy a big duffel bag and come get me! Mom and Debbi started packing up my room and took one big load of things home (you accumulate alot) and then Loren came and we filled out the rest of the paperwork and we walked out of the hospital!
What an amazing feeling to sit in a car, drive up the freeway and see something different out of the windows after 34 days on the 8th floor of LDS Hospital. I am so grateful to live so close to a facility as amazing as the Bone Marrow/Leukemia center at the hospital. They are literally saving my life.
But it still was great to have the first part of the treatment complete!
We decided to surprise our girls. Emily had a soccer game that afternoon and we were trying to get there before she had to warm up but that wasn't going to work out so I called her from the car and let her know that I would be at her game that day. There was a mixture of tears and laughter - I don't think she knew quite what to do! I did make it to her game in a big floppy hat and a mask and sat away from everyone but it was great to finally see her as part of the Bonneville High soccer team. They have been incredibly supportive of her and of our family.
Thankfully we were driving the hybrid car so we could pull quietly into the driveway. I got out, Loren got in position to film and I rang the doorbell. Elizabeth answered the door and just stared at me for a while. Her brain just wasn't ready to see me standing on the porch. After a few seconds she just said, "Mom?" and gave me a big hug. Then I had her go get Callie. I stood to the side of the door so Callie couldn't see my clearly but she could see Loren filming her and was quite confused until it registered that her mom was standing on the porch. Lots of hugs happened and I our happiness was immense.
So, I haven't written for awhile because I have been quietly enjoying my short time at home!
Thank you for your continued support!
After the nurse (Becca) told me my numbers she could tell I was not happy. Usually I would be chatty and positive about the next day but I was just ready to have myself a great big pity party! I wanted to be by myself and cry and sulk. I knew that later that day I would be fine but the pity party sounded like the way to go right then.
Fortunately, my mom and Debbi came that morning and saved my from my personal pity party. They listened to me cry and rant and cry some more. In the middle Debbi did one of the most selfless acts of love....she just grabbed my feet and started to rub them. The simple release that came from that act was astounding. Emotions just came out. I don't know how she knew to do that but I was/am grateful for her simple acts of love in my life.
We decided to go for a walk outside and mentioned that to Becca (nurse). She asked how long we were going to be and then suggested that we come back by about noon because we were going to want to talk with Dr. Mitchell. All this was said with a conspiratorial grin on her face. I wanted to hope but didn't dare so we just went for a walk.
Shortly after we came back, Dr. Mitchell came in to talk with us and told us that my neutrophils were still at 100. Then she asked, "How would you feel about going home today?"
SAY WHAT!!!!!????
With absolutely no hesitation I said (or I might have yelled) YES!! She cautioned us that I still had no immune system so I needed to be very careful and cautious. She could have told me to wear a hazmat suit with a clown wig and I wouldn't have cared - I was going HOME!!! I agreed to call if anything in my condition changed. Then I called Loren and told him to buy a big duffel bag and come get me! Mom and Debbi started packing up my room and took one big load of things home (you accumulate alot) and then Loren came and we filled out the rest of the paperwork and we walked out of the hospital!
What an amazing feeling to sit in a car, drive up the freeway and see something different out of the windows after 34 days on the 8th floor of LDS Hospital. I am so grateful to live so close to a facility as amazing as the Bone Marrow/Leukemia center at the hospital. They are literally saving my life.
But it still was great to have the first part of the treatment complete!
We decided to surprise our girls. Emily had a soccer game that afternoon and we were trying to get there before she had to warm up but that wasn't going to work out so I called her from the car and let her know that I would be at her game that day. There was a mixture of tears and laughter - I don't think she knew quite what to do! I did make it to her game in a big floppy hat and a mask and sat away from everyone but it was great to finally see her as part of the Bonneville High soccer team. They have been incredibly supportive of her and of our family.
Thankfully we were driving the hybrid car so we could pull quietly into the driveway. I got out, Loren got in position to film and I rang the doorbell. Elizabeth answered the door and just stared at me for a while. Her brain just wasn't ready to see me standing on the porch. After a few seconds she just said, "Mom?" and gave me a big hug. Then I had her go get Callie. I stood to the side of the door so Callie couldn't see my clearly but she could see Loren filming her and was quite confused until it registered that her mom was standing on the porch. Lots of hugs happened and I our happiness was immense.
So, I haven't written for awhile because I have been quietly enjoying my short time at home!
Thank you for your continued support!
Monday, September 8, 2014
Answer to prayer
Monday, September 8 2014
This past Sunday our ward and stake held a fast for all those ward and stake members who were in need of extra blessings. I know that Loren bore his testimony yesterday about a priesthood blessing he was able to give me before I started chemo. In that blessing he was impressed to tell me that the faith and prayers of others would sustain and bless me. He also spoke about the power that comes from combined fasting and prayer. What we did not know yesterday was that today we would find out that our prayers and the prayers of many others would be answered. The nurse came in this morning and told me that my good white blood cells (neutrophils) that we have been waiting for have started to regenerate!
When they reach the magic number of 500 (I have 100 now) I can go home for a few weeks before my bone marrow transplant. Every morning the nurses draw blood to measure several things - neutrophils being one of them. The number has been at zero for over a week while the other types of cells in my blood have been increasing. So, when the nurse, whom I haven't had before, told me I had neutrophils I jumped up and down and let out a little yell!
Thank you for your faith, fasting and prayers on behalf of me and my family. They are heard and answered.
This past Sunday our ward and stake held a fast for all those ward and stake members who were in need of extra blessings. I know that Loren bore his testimony yesterday about a priesthood blessing he was able to give me before I started chemo. In that blessing he was impressed to tell me that the faith and prayers of others would sustain and bless me. He also spoke about the power that comes from combined fasting and prayer. What we did not know yesterday was that today we would find out that our prayers and the prayers of many others would be answered. The nurse came in this morning and told me that my good white blood cells (neutrophils) that we have been waiting for have started to regenerate!
When they reach the magic number of 500 (I have 100 now) I can go home for a few weeks before my bone marrow transplant. Every morning the nurses draw blood to measure several things - neutrophils being one of them. The number has been at zero for over a week while the other types of cells in my blood have been increasing. So, when the nurse, whom I haven't had before, told me I had neutrophils I jumped up and down and let out a little yell!
Thank you for your faith, fasting and prayers on behalf of me and my family. They are heard and answered.
The Great Outdoors
Saturday, September 6 2014
Big news for this weekend was that I got to go outside!!!! The PA told me Saturday morning that I could go outside and see our dog. I immediately began to cry. It was an unexpected blessing. Normally we (AML) patients can't go outside without neutrophils being high. Mine weren't but my doctor understood that I needed a diversion from the routine. It was 4 weeks to the day that I was admitted to the hospital that I was able to walk outside. As I went to leave the 8th floor, I thought, "I'm not even sure how to get out of the hospital. I have only come in, I haven't ever left!" I somehow found my way to the main door... Stepping outside into the fresh air, the sunshine, the fresh smells was exhilarating! Being able to be outside is a blessing! We were able to sit in the shade together and even play with our dog. I realized how the little things are such a blessing. An even greater blessing was being able to spend time with my family someplace other than the inside of a hospital.
Big news for this weekend was that I got to go outside!!!! The PA told me Saturday morning that I could go outside and see our dog. I immediately began to cry. It was an unexpected blessing. Normally we (AML) patients can't go outside without neutrophils being high. Mine weren't but my doctor understood that I needed a diversion from the routine. It was 4 weeks to the day that I was admitted to the hospital that I was able to walk outside. As I went to leave the 8th floor, I thought, "I'm not even sure how to get out of the hospital. I have only come in, I haven't ever left!" I somehow found my way to the main door... Stepping outside into the fresh air, the sunshine, the fresh smells was exhilarating! Being able to be outside is a blessing! We were able to sit in the shade together and even play with our dog. I realized how the little things are such a blessing. An even greater blessing was being able to spend time with my family someplace other than the inside of a hospital.
Friday, September 5, 2014
A Temporary Separation
The judge has granted me a temporary separation from my IV pole aka Skinny Joe. YAHOO!!!!! The sense of freedom is exhilarating! I honestly don't think I can use too many exclamation points to express how excited I am! I have been attached to the IV pole non-stop since Sunday, August 10th and now I am free!!! I can actually turn in a circle without getting tangled. I can leave my room unaccompanied! I literally danced down the hallway this morning. I will have to see him again when it is time to replenish my artificial immune system but hours on my own will be cherished.
On a medical note. ...still no neutrophils but my body is making its own platelets and a few red blood cells. Please keep praying for neutrophils so I can go home for a few weeks. (Don't tell Skinny Joe, but he has to stay at the hospital.)
On a medical note. ...still no neutrophils but my body is making its own platelets and a few red blood cells. Please keep praying for neutrophils so I can go home for a few weeks. (Don't tell Skinny Joe, but he has to stay at the hospital.)
Still waiting
Thurday, September 4
Just thought I would update that nothing has changed. I am still feeling good and am just waiting for my bone marrow to start producing blood on its own. Right now the hardest part is feeling good but still being restricted because of the lack of an immune system.
Not having an immune system is an interesting thing. Usually when you are missing something so vital that without it you get very sick you would notice.
Not the immune system. Nothing feels different, nothing looks different (except for the hair and that was the chemo), nothing smells different or sounds different but you get to sit in the hospital restricted to the 8th floor - east side only and if you leave your room - you are covered in what could almost pass for a hazmat suit.
So the challenge becomes how to keep the little bit of sanity you actually came with. Part of that process is to acknowledge that life is different and will continue to be for some time - not forever but for a long time. There is loss that comes with that change. I won't list the losses here but you can imagine what is lost when you spend 28 days on the east side of the 8th floor of the hospital. A friend who has also battled cancer on this floor gave me some good advice. He said that the trick is to acknowledge the losses but also the gains. Seeing both for what they are is important and giving each the time and consideration they deserve. The gains are more subtle but no less significant and are unique to each person and the path they are walking.
My gains have included....realizing how strong each of our daughters is and can be....increased love and devotion for Loren....a greater understanding of who the Holy Ghost is and His role in the Godhead...knowing what it feels like to have people praying specifically for you...humility
There are many more that I haven't listed and more to come. I am grateful for the advice from John and for the time to put it into practice.
Just thought I would update that nothing has changed. I am still feeling good and am just waiting for my bone marrow to start producing blood on its own. Right now the hardest part is feeling good but still being restricted because of the lack of an immune system.
Not having an immune system is an interesting thing. Usually when you are missing something so vital that without it you get very sick you would notice.
Not the immune system. Nothing feels different, nothing looks different (except for the hair and that was the chemo), nothing smells different or sounds different but you get to sit in the hospital restricted to the 8th floor - east side only and if you leave your room - you are covered in what could almost pass for a hazmat suit.
So the challenge becomes how to keep the little bit of sanity you actually came with. Part of that process is to acknowledge that life is different and will continue to be for some time - not forever but for a long time. There is loss that comes with that change. I won't list the losses here but you can imagine what is lost when you spend 28 days on the east side of the 8th floor of the hospital. A friend who has also battled cancer on this floor gave me some good advice. He said that the trick is to acknowledge the losses but also the gains. Seeing both for what they are is important and giving each the time and consideration they deserve. The gains are more subtle but no less significant and are unique to each person and the path they are walking.
My gains have included....realizing how strong each of our daughters is and can be....increased love and devotion for Loren....a greater understanding of who the Holy Ghost is and His role in the Godhead...knowing what it feels like to have people praying specifically for you...humility
There are many more that I haven't listed and more to come. I am grateful for the advice from John and for the time to put it into practice.
Thursday, September 4, 2014
Debbi said I should call this one "The Bald Brethren"
How many girls get to take a picture with their dad and brother-in-law because they have the same haircut?!!! Thanks Dad and Lance!
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| My hematologist does my hair - what is your excuse? |
Tuesday, September 2, 2014
The new hairdo!
Emily was our photographer during the haircut! Just got the pics..... Started off with the smiley face from Callie and then a lightning bolt from Loren and then the grand finale - the Hawk from Eliz and Emily. Had a great time - glad we could make it fun - not many girls get to shave their mother's head!
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| Who would have guessed the Bryners are such rockers!!!! |
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| Love this man with all my heart! |
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